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This topic has 5 replies, 4 voices, and was last updated 4 months, 1 week ago by DeAnn R.

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    • #22364
      DeAnn R

      “I knew anesthesia bad idea” is scribbled, barely legible, on the first page of a little blue notebook. Mom intended this notebook for grocery lists and reminders. She never imagined it would be a communication device for her daughter when she woke up on a ventilator after a routine surgery. As one of the most difficult times in my life I can look at it as a time of perseverance.

      Knowing my abdominal pain wasn’t something to ignore I decided to go to the hospital. In the ER they discovered my gallbladder as the culprit. Easy fix, remove it. Next thing I knew I was having it taken out. Although I had reservations I figured it was routine so not a big deal. Because of my feeding tube doing it laparoscopically was out. Supposedly the open cholecystectomy means a longer recovery and a nice scar. Unfortunately for me it also meant aspirating while under general anesthesia, a nicked bile duct and waking up on a ventilator.

      Waking up I had that “oh crap” realization when my breathing wasn’t to my own rhythm. With tubes down my throat I couldn’t speak. Fortunately I was able to grip a pen to scribble a few words on to paper. Most notes had to do with positioning. Genuinely I had my doubts I’d ever be comfortable again.

      Removing the breathing tube on the first attempt failed miserably. After a few breaths on my own, suddenly I couldn’t get air into my lungs. My eyes got big as I made eye contact with the nurse and mouthed the words, “I can’t breathe.” My panic reflected in her as she quickly activated the Code Blue alarm. Nurses, doctors and the anesthesiologist rushed in attempting to re-intubate me. My limited jaw extension was problematic. Regardless they managed although I don’t recall how as I they knocked me out for the process.

      Waking up a second time to a foreign breathing rhythm I felt defeated. Comforted with my sister holding my left hand and Mom on my right I was grateful for waking up despite feeling weak. Initially my sister was working. While the code was being called Mom frantically phoned her. Thankfully she rushed in so Mom didn’t have to be alone.

      Once again the little blue notebook became my communication, although I needed support to hold my wrist to write.

      “Don’t you want to cry?” Mom asked.

      My response, “Want to cry makes snot.” Squiggly but clear on a middle page of the notebook.

      Crying on the inside I knew actual tears produce mucus and that’s the last thing my body needs. At this point the doctors came to the realization I should be at a hospital more capable of dealing with my medical complexities. Recovery was an extensive process.

      Why Mom saved the notebook I’m not quite sure. Looking back I can say I went through a great deal and came out the other side. I may be physically weak, but I have a great deal of strength. Have you been through life threatening ordeals? What got you through it?

    • #22439
      Alyssa Silva

      My mom has always told me SMA weakens the muscles but strengthens the heart. And I couldn’t agree more. I’ve been through the wringer and back, and although it has affected me physically, it’ll never rob me of my mental strength. In fact, I think these hard times build mental toughness.

      I’ve been through many life-threatening ordeals. I guess the most recent one was about two years ago. I had a serious bout of gastritis and couldn’t eat. This had happened in the past, but what was different this time was that I was on Spinraza and unaware that it speeds up my metabolism.

      Being my stubborn self, I waited until the last possible second to go to the ER. I thought… just mayyybe… my stomach would start to feel better. But it didn’t. During the hour-long ride to the hospital, I started “slipping.” I couldn’t sit up, my breathing was labored, and my bladder was letting go. It was terrifying. I was aware of what was happening but couldn’t convey it because I was in a daze.

      To make a long story short, my brother carried me into the ER so he could run and not waste another second. What happened was my sugar had gotten so low from not eating that I was on the verge of a coma. I’d never had issues with my blood sugar, so I never expected this to happen.

      About ten minutes after my glucose infusion, I became alert and back to my normal self. I looked around the room and kept seeing the word “trauma” everywhere.

      Confused and scared, I said, “Mom… am I in the trauma center?”

      She defeatedly nodded her head yes. I was kept for observation for 2 days and recovered for about 4 weeks at home. Those few hours took every ounce of reserve my body had left.

      What a powerful story, DeAnn. Thank you for sharing.

    • #22454
      DeAnn R

      Thanks for sharing your story too Alyssa. Scary moments like these can really make a big impact on our lives. We’re lucky to have supportive families to help us get through them. Glad you’re okay.

    • #22476

      Wow both of these stories are intense. I especially feel for you, DeAnn, with the ventilator. I hate the thought of being in the hospital or anywhere with a ventilator so much that I have a dnr in place. But I also can’t imagine what it would feel like to be slipping, as you say Allysa, and not be able to communicate that.

      For me, I’ve been through a lot of intense moments like those, mostly back when I still lived with my birth parents who were not good or supportive in any way. I mean, it took 2 weeks for my birth dad to think I should go to the doctor cuz I was so sick that I wasn’t eating or drinking even though I have always been obsessed with food. And even then, he had my home health aide take me instead of himself. And my doctor took one look at me and said to her nurse, “Call an ambulance.” I was terrified at that point and I became even more scared when I found out that I was going to be alone with the paramedic cuz my home health aide wasn’t allowed to be in the ambulance with me since she was not family. I was only 7 years old. But strangely, once I got in the ambulance, I was actually very calm and felt completely safe. I think that the paramedic was my guardian angel or something. But the most terrifying moment for me was actually when I was around thirteen years old. I wasn’t sick or anything but at random times my lungs would just block up. It literally felt like my mucus formed a wall in my lungs that prevented me from breathing at all. If it happened while I was hanging out with my brothers, I was fine cuz they both knew that me waving frantically at my chest meant that I needed help and they both also knew how to do cough assist with me. But a lot of the time, it happened while I was alone and that was terrifying. All I could do in those moments was suck in my ‘breath’ as best as I could and pray to God that the wall would break so that I could cough the stuff up on my own. I’m so glad that’s not still happening.

    • #22486
      Halsey Blocher

      I’m pretty sure most people with SMA have had at least one brush with death. Mine was actually exactly 9 years ago today. I’d already been in the hospital for a little over a month. I had the flu and pneumonia, plus I picked up a staff infection at the hospital. It was bad and I was so sick that I honestly can’t remember most of it. And of course it all happened during one of the worst blizzards we’ve ever had. The fire department had to dig us out of the house so that the paramedics could get to us. But what happened on this day, I clearly remember. It had been decided that I was finally strong enough to be extubated, and switched back to my bipap. I remember being taken to the OR. They were using an ambu bag to help me breathe all the way there, but weren’t giving me frequent enough breaths, so I was trying desperately to suck in some air on my own too. Not sure why I remember that bit so clearly, but I’ve never forgotten it. I remember blacking out as they were putting their gowns on. I don’t remember any of what followed since I was unconscious. I know that I coded twice. They had to do an emergency tracheostomy surgery. The grace of the Lord is the only reason I survived. My family never left my side, and eventually I went home. It was a long and slow recovery. The whole ordeal has had huge impact on all of our lives. I’m very thankful I’m still here. It’s truly a miracle.

    • #22488
      DeAnn R

      Pretty powerful stories!  Thanks for sharing.  Just shows that despite our physical weakness we have an abundance of inner strength to get through these difficult times.  Having a support system helps too.

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